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diagnosed ppms 3 wks ago given alfacalcidol

Any idea what this is for? I asked to see if there was anything to ease my fatigue which comes on after I walk for a short distance or do any work in the garden etc… I also take vit d supplements 1000 iu but after researching the given drug it states do not take other vitamin supplements! Also take b12… am I brainwashed taking any of these vitamin. My diet is good, spinach most days, fruit veg etc… live in north of england so not much sun at the mo… cant get to see my neurologist for 8 weeks so haven’t been given much advice on what’s likely outcome of having ppms, just seen folk on you tube even though my doc says not to read too much into other peoples symptoms as everyone is different. Easier said than done!

Anyway, just want to know what this alfacalcidol is for as even my doc don’t know…

Most web results seem to suggest alfacalcidol is a form of vitamin D. (…A lot of MS sufferers are found to be deficient in vit. D and supplementation is often recommended. Please bear in mind vit D3 is specifically recommended - to make up for lack of exposure to sunshine.)

Perhaps your GP/MS Nurse/Neuro/Pharmacist could explain this a bit further ?

Best of luck,

Dom

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thanks, it is D3 supplement i am taking. Holand and Barrett fish oil 1200mg with 1000iu vit d3. GP didnt know what neuro had given me the alpha one for so not much luck there. The info sheet says i should have regular blood tests…nada. And as for Neurologist, 8 weeks and thats with me pestering his secretary on numerous occassions.

https://www.google.co.uk/search?q=alfacalcidol+and+ms&ie=UTF-8&oe=UTF-8&hl=en&client=safari

this link gives a little information with regard to MS.

Nina

i have probably been given the Placebo as it aint working lol. Only been on it a fortnight so I am sure it will take longer if it was to make any impact on my fatigue. Theres no mention of the amount of the analog vitamin D it contains (not sure what I am on about really)

Hi Tobytyke, just want to say hi and welcome…

You’ve found the very best place for advice, support and friendship.

Hope you coping ok with new diagnosis. It takes time to get your head round it… best advice is to take it one day at a time.

Some of us take a much higher dose of Vitamin D3. 5,000 units a day. You can’t get them on the NHS but they are a very good price on Amazon from Healthy Origins.

Don’t know if they make any difference at all… but you never know!

Pat xx

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Hi Tobytyke

I was discovered to be low in Vitamin D before I was diagnosed, and put on Adcal D3 supplement. The deficiency was though to be a result of not going out much because I was told to avoid too much exposure to direct sunlight while I was doing chemo for lymphoma. My levels became reasonably satisfactory and have been ever since, but now I am dx PPMS i remain on the supplement (and still don’t get out much because I don’t have the energy or the mobility to do so.)

I don’t think it actually does anything for fatigue, and I don’t think it’s really meant to- it’s simply given to help me maintain a healthier vit D level.

I an also on a sodium supplement because I tend to have drops in my sodium levels occasionally. Now that does make me feel lousy when it happens!

Kev

thanks for this info, i have just ordered some vit d3 drops, in orange flavour and for vegetarians, not that i am a veggie… I read that with the alpha one i should not take any vit d supplement. Apart from this then what is good for fatigue, went to the local footballmatch last night, it was a tad cold, and i struggled to even walk the 100 yards or so back to my car… looked like an extra out of walking dead, shouldnt laugh but i did hehe.

Hello Tobytyke,

Most of us on here have problems with fatigue. It is something I’ve had to manage as it has slowly become more debilitating. A hard truth, and one to make us laugh and scream at the same time. My last football match was the opening game of the 2002/3 season. It was a hot day and by the time I got back to the car I was really struggling. So much so that the young lad I’d given a few bob to to “mind” my car said (I can’t effectively portray his thick scouse in writing) “Are yooz a’right mace?”

As for medication, I’ve been on amantadine but I don’t think it works.

Best wishes, Steve.

Fatigue is something we have to learn to live with. At first I used to try and fight it… but slowly I came to the realisation that fighting it makes it worse.

Given time you’ll get a lot better at understanding what makes your fatigue worse and what helps. But basically when my MS screams GO TO BED I do as I’m told.

Making your bedroom a little paradise helps as well. TV, radio, books, ipad or laptop… all helps.

I’ve tried amantadine and it made me very anxious… I’d rather have fatigue… also I think that if your body is fatigued by illness using a drug to fight that fatigue is probably not good in the long run. It’s a personal opinion that i’m sure some people will disagree with.

Nina who uses this board says that a neuro once told her ‘The more you fight MS the more it will fight back’. I think that’s excellent advice.

Pat xx

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hi if you are taking the alfacalcidol you should stop taking the other vitamin soplements you are takin

It wont do you any good if you take to much vitiman d all the best g

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I’ve pretty much given up the thought of going to footie, but by 'eck do I miss it! My last home game at Vicarage Road was in October 2009. It was a lovely warm autumn, I went to about four games on the trot in my shirt with no need for a fleece or a jacket. Didn’t know I was about to be hit by a steamroller.

I also got to Wembley for the play-offs in 2013, that was a lovely sunny day too. But generally I can’t face sitting in my wheelchair for two hours outside even in mild weather now, let alone manage the journey. On top of that, the Vic has pretty poor accommodation for wheelchair fans. (Most are put at pitch level, terrible view). Wembley has excellent facilities and great stewarding for disabled fans, though- can recommend that.

I keep in touch now via an internet forum and extended highlights on the ‘Hornets Player’ now.

Kev

PS Steve- I love the scouse rendition. Are you Red or Blue?? Or were you away from home?

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